06.21.18 Some Things I Learned About Dementia – Love them, be kind to them, be sweet even childlike sweet originally published 12.19.14

Thursday, June 21, 2018 – This was originally written in 2014. I have to admit that while re-reading this particular blog post from 2014 it brought tears and heartache to me. I have read so many stories and episodes that caregivers have shared of how difficult care giving is and it absolutely is. It’s horrendously difficult to watch your loved one suffer and turn into someone unrecognizable. A common comment from spouses of someone with dementia is that “It is so hard to grieve the loss of someone who is still living.” I now see these difficulties from the other side and feel the importance of others understanding this horrible disease from our side as well.

Originally published 12.19.14 – Nothing in today’s blog is from any source other than our experience with Mama. She lived in our home during the final stages of Alzheimer’s. While we were moving from one house to another (and doing renovations on the new house) she lived in a local Assisted Living Home. Most of the main points I make below can, and I hope will be, used in your care giving. I’ll share what we did that seemed to work and you take it from there to fit your situation.

This week’s blog started out being about two other topics. However, as I collected information to share and writing pieces to add into these blogs, one thing keeps tugging at me to be shared first.

So here it is: Love them, be kind to them, be sweet even childlike sweet. Always strive for patience and calmness. Pray often for these things. It may not be in your nature to love others, be kind to others or be sweet to others. If not, I beg that you try it during this time. fake it if you must, but be loving, kind and sweet to them.

Are caregivers saints?? No, but sometimes it will feel like everyone expects you to be one and you may feel heavily weighed down with this responsibility. My solace was knowing that God is my Savior, my King, my everything and He would never leave me alone as I cared for Mama. My pastor was a great comfort during that time. My husband was my hero loving Mama like she was his own Mama and allowing our household to be completely turned upside down for a long time. Normal took on a new meaning and I can’t stress that enough. We learned to laugh a lot and be silly to break the stress that sometimes hung in the air. My sister was my primary relief and was wonderful about coming to stay with mama as often as I needed her to. She’s my only sister, so it fell on us to care for mama in her last years, as she so willingly loved and cared for us during our childhood years and on into our adult years.

These Alzheimer’s patients (I’d like to call them victims) didn’t make the choice to lose themselves to this disease that eats away at their true being, a little piece at a time. They are very dependent on their caregivers for a lot during the middles stages and for everything during the final stage.

It is easy to say “They don’t know what’s what, so why even care?” Can I say strongly enough “Shut it”. Don’t even go there if you have a loved one in need of your care. Most likely they were one of your primary caregiver when you were a baby growing into a child, teenager and didn’t let go until you became an adult. They loved and cared for you then and now is your opportunity to return that love and care.

Making the decision to become the primary caregiver may not have been a choice you made. You may have gotten it by default or you were the only one available. Whatever the reason, you have in your hands the heart and well being of someone for the final years, months and days of their lives. It’s a lot like being a parent, only the roles are reversed now.

Near the latter stages of Alzheimer’s Mama didn’t always know either my sister or I was her daughter, whose house she was living in or even who she was. Then nearer the end she couldn’t speak, walk, or smile any longer. This decline occurred over maybe a month or two so I know we were very blessed at that short period of time.

She had the most beautiful smile, I just had to share that!

During this time I started calling mama “pretty girl”, touching her face lovingly with the back of my hand, and loved her like a child loves to be loved. No matter what was happening in the rest of the house or how many times she’d call me into her room for the same thing over and over I “tried” to always enter her room with a smile on my face. She responded with sweet smiles and if she had been agitated like they sometimes are, that would stop.

When they leave the world of reality for their bizarre little world, creating peace and happiness in some form for them is key.

I had two little beanie babies that we gave Mama as her babies to pet and love, and she was so happy with them. Mama loved to be needed and be helpful to others. She took right to taking care of the babies in the same way she use to take care of us. We would talk to them and she’d tell me stories about them and the joy on her face during those times was so heartwarming.

When she’d tell me some absolute foolishness I’d go there with her to her weird little world, and we’d have a grand old conversation.

Most people benefit from the touch of another person. These wonderful people are no exception. Mama often applied hand lotion to her hands pre-Alzheimer’s and her hands were always soft. She responded so well to having that done while living with Alzheimers that we made a regular practice of doing that. Just that simple act calmed and soothed her spirit. Don’t just stop with the hands and arms (and while doing that do it slowly so they enjoy it longer) every now and then do their feet and legs. The stimulation this gives them is so therapeutic to giving them another moment of light in their otherwise darkening world.

In one of next week’s topics I’ll share more about how we tried to provide a peaceful loving environment for Mama based on her love for the Lord.

Your Alzheimer’s patient isn’t my mom, so your choices will be different, but they all deserve all our love and kindness. You will see that message in my different forms throughout the weeks this blog is written.

Please come back next time when I’ll share two topics: Learning about your loved ones lives before it’s too late and how to use their passions from when life was good to bring some joy into their current lives If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.